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Name of Media:

End of life care for patients with cystic fibrosis


Dorota Sands, Teresa Repetto, Lieven J. Dupont, Aleksandra Korzeniewska-Eksterowicz,Paola Catastini, Susan Madge

Publisher or Source:

European Cystic Fibrosis Society

Type of Media:

Medical Journal

Media Originally for:

Critical Care Physicians,Nurses and/or Other Critical Care Medical Professionals

Country of Origin:


Primary Focus of Media:

Pre-Use of PICS Designation

COVID-19 Related:



Palliative care is an approach that improves quality of life for patients and their families facing problems associated with a life-threatening illness. Care planning is particularly important in CF, where predicting a time of death is extremely difficult. The patient and family should receive realistic information about health status and further options of care. Particularly important is the explanation that treatment does not stop during the terminal phase of the disease, instead the primary aim is to alleviate unpleasant symptoms. More invasive end of life care is becoming the norm in patients awaiting lung transplantation. Terminal care should be organised in the place chosen by the patient and their family.Ideally terminal care should not end when the patient dies, instead psychological and spiritual support should continue to bereaved families.

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